Hello! I am new to the group and I believe I have eagle syndrome and vEDS. I was starting my diagnosis journey when I suddenly had stroke like symptoms twice in one week. I went to the emergency room and they found no stroke evidence but while I was there I started having issues speaking. The er doc gave me a migraine cocktail to get it back to normal. It took multiple er visits for them to figure that out. Anyone have any experience with that and eagle syndrome?
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Hi, I can share I have had these symptoms for many years. blindness, unable to speak, flashing lights, numbness. Usually lasts for about an hour, 3 episodes in my life lasting a month with constant symptoms. Sorry you went thru this, it is scary. In my case they have always said it was migraines, but now understanding I have VES. I feel it is due to the vein compression. And because most providers do not recognize ES or vascular compression, I was always diagnosed as migraine with aura. I hope you can find a provider and get answers.
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@Adapple - Welcome to our forum! Your symptoms sound like you could have internal carotid artery (ICA) compression or irritation being caused by your styloids &/or calcified stylohyoid ligaments. When an ICA is irritated or compressed by a styloid, stroke-like symptoms can occur as well as vertigo, fainting, headaches/migraines, & other problems.
Here’s a link to a post about ES symptoms & possible causes:
In order to get this diagnosed, you’ll need to get a CT scan w/ contrast, or even better, a CTA & a CTV which are more specialized to look at the arteries & veins in your neck. If you can get the testing done dynamically i.e. w/ your head turned L/R, looking up/down, etc., that can help show in which head positions the vascular compression is worse. It’s important to get the area from skull base to hyoid bone imaged & to ask for 3D pictures to be included in the images you receive. Always ask for 2 CDs of your images before you leave the radiology clinic as you’ll likely need at least one to send to the doctor(s) you choose to do your consult(s).
You can get a consult from Dr. Osborne in California for $250 which is about the lowest out of pocket amount any doctor we know of charges. He is very experienced with ES & won’t expect you to see him for surgery just because you’ve had a consult with him. Another doctor you could consult with is Dr. Chan Leveno, but I don’t know what she charges for initial ES consults. Usually initial consults are not covered by insurance.
•Dr. Ryan Osborne - Los Angeles ENT Doctors ENT Specialists Surgeons Cedars Sinai Medical Osborne Head & Neck Institute, Los Angeles, California. His website is OHNI.org
•Dr Teresa Chan-Leveno, University Of Texas Southwestern Medicine Centre, Dallas 214- 645- 8898 (Otolaryngologist) https://utswmed.org/doctors/teresa-chan-leveno
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Thank you so much for the info! Do you know what forum i can post a scan for the forum to review?